Abstract
Background:
Immunosuppression nonadherence may be the most important factor limiting long-term allograft survival.
Objective:
Following user-centered design, we explored the essential priorities and preferences of kidney transplant recipients and healthcare providers (HCP) to inform development of a smartphone app to improve immunosuppression adherence and communication.
Design:
A qualitative descriptive research design was used.
Setting:
The University of Alberta Hospital adult kidney transplant program in Edmonton, Canada.
Participants:
Participants were recruited by convenience sampling and included 32 kidney transplant recipients and 11 HCPs.
Methods:
Seven focus groups (5 with recipients and 2 with HCPs) were conducted to inform app development. Sessions were recorded, and transcripts were coded to elucidate themes.
Results:
App development to improve adherence was not a priority for HCP. Recipients prioritized choice: that all features be optional. Recipients preferred support while traveling; access to laboratory results; and use by younger or newly transplanted recipients. Both recipients and HCP preferred linkage to pharmacy; and self-management and accountability.
For the app to improve communication, HCPs believed the priorities to be addressed included: clarity on scope of app; legal, ethical, and professional obligations; and charting. Both recipients and HCP prioritized HCP workload, and broader medication and health concerns. Healthcare providers preferred tech support; both recipients and HCPs preferred app access for nontransplant HCP.
Limitations:
Limitations include underrepresentation of physicians, recipients with racial/ethnic diversity, and potential selection bias of transplant recipients who perceived themselves to be adhering to immunosuppression medications.
Conclusion:
Future research is needed for the app to become a comprehensive, secure platform for broader communication between recipients and HCP, pharmacies, and nontransplant clinicians while streamlining HCP workload.
What was known before
Poor immunosuppression adherence may be the most important factor limiting long-term graft survival.
The transplant community has identified that development of effective interventions to improve adherence is a priority.
Technology may help improve medication adherence for kidney transplant recipients
What this adds
While we explored development of a smartphone app to improve immunosuppression adherence, we found this was not a priority to HCP. HCP-recipient communication to improve overall experience within transplant care was prioritized over immunosuppression adherence.
Kidney transplant recipients prioritized choice, independence, and greater access to their health information over potential monitoring.
Healthcare providers and recipients together imagined use of a comprehensive platform for broader communication between themselves, pharmacies, and nontransplant clinicians while upholding security requirements and streaming HCP workload.
Introduction
Poor immunosuppression adherence may be the most important factor limiting long-term graft survival.1-4 Immunosuppression nonadherence is common, with estimated prevalence up to 36% 5 in kidney transplant recipients. Development of effective interventions to improve adherence has been identified as a priority by the transplant community.6,7
Several trials demonstrated that technology may help improve medication adherence for kidney transplant recipients7-11 McGillicuddy et al 8 demonstrated that an app-based reminder system to self monitor blood pressure and provide blood pressure measurements resulted in better adherence and more medication adjustments by the healthcare providers (HCP). The TAKE-IT trial 9 showed that individualized coaching, adherence monitoring and feedback using an electronic pillbox, and dose reminders using text messages, resulted in a 66% greater likelihood of adherence compared with monitoring alone. Nguyen et al 10 also explored strategies and challenges to improve medication adherence, including opinions on usage of and electronic pill box along with a supplemental website and features such as reminders and longitudinal pill box data tracking. While electronic ingestible pills are now available, the long-term research into acceptability in the transplant settings are still needed. 7
In today’s world of extensive smartphone use and a culture in which “there is an app for that,” the feasibility of integrating app technology to improve adherence in transplantation is growing. 11 While most reviews found that while the evidence for using mobile technology is moderate, they concur that there is great opportunity to promote therapeutic adherence using mobile health interventions.12-19 Among transplant recipients, smartphone ownership and interest in using medication apps have doubled in the past 5 years. 20 While a variety of medication apps are available commercially, even the top performing apps curated by medappfinder.com require motivated individual users to actively sign up with the apps and then allow the apps to share information with their physicians.7,20 None of the available apps were designed to be integrated as part of a transplant center’s electronic medical record (EMR), nor intended to be employed on a program-wide basis.7,20-22 Therefore, we plan to build an integrated app within an existing Health Insurance Portability and Accountability Act-compliant EMR, with the intention of programmatic implementation to improve medication adherence and communications between patients and HCP. We employed a user-centered design23,24 to explore the following research question: What are kidney transplant recipients’ and HCP’s essential priorities and preferences to inform the development of a smartphone app to improve immunosuppression adherence and communication? This approach will improve app acceptability and usability as it is “designed” by the users.
Methods
Study Design
Following a qualitative descriptive research design, 25 we conducted 5 recipient focus groups and 2 HCP focus groups to collect qualitative data, and applied thematic analysis.26,27
Participants
Participants were recruited by convenience sampling 28 from the University of Alberta Hospital adult kidney transplant program located in Edmonton, Canada. 29 Transplant recipients were informed about the study when they attended clinic appointments (between June to August 2018). Nonclinical research staff followed up with interested participants to provide additional information and obtain informed consent. The inclusion criteria for recipients included: age over 18 years; and being a kidney transplant recipient followed by the program. Recipients were excluded if they had significant cognitive impairment or language barrier. The inclusion criteria for HCP included both physicians and allied health transplant care team involved in patient care, and all were verbally invited to participate
Data Collection
Focus groups (1-1.5 h, 4-9 participants per group) were undertaken to elicit group discussions. 28 They were conducted by an experienced facilitator (L.E.L.) who had no prior relationship with participants and guided by a semistructured discussion tool (see Supplementary File 1). Of the 5 recipient focus groups, 4 were conducted in a conference room at the hospital, outside of the clinic setting; one was stratified for younger recipients (<40 years) and conducted via Skype. Healthcare providers focus groups were conducted in a conference room, outside regular work hours. All focus group discussions were audio-recorded.
Data Analysis
Field notes were used to record initial impressions and contextual details. Focus group transcripts were coded inductively and independently by the facilitator (L.E.L.) and a research associate not present during data collection, using NVivo 12. They created “memos” to note analytic reflections and met to discuss coding differences and reach consensus. To compare and contrast priorities and preferences, recipient and HCP data were first coded and analyzed separately, then combined, compared and contrasted between groups to elucidate thematic 26 commonalities and differences in their priorities and preferences in app design. K.S.M., L.E.L., and K.W. reviewed emerging findings, and through consensus agreed on the final thematic structure. App features were defined as “priorities” when participants discussed the feature as essential. App features were defined as “preferences” if they were discussed as optional. Through this analytic approach, inductive thematic saturation was achieved. 30 The Consolidated Criteria for Reporting Qualitative Research guidelines were followed. 31 (See Supplementary File 2).
Ethical Approval
This study was approved by the University of Alberta Health Research Ethics Board and Alberta Health Services. All recipient and HCP participants provided written informed consent.
Results
Participant Characteristics
Thirty-two kidney transplant recipients and 11 HCP who worked in the transplant clinic participated (Table 1).
Characteristics of Recipient and Clinician Participants.
Themes
Development of an app to improve immunosuppression adherence entailed one essential priority identified by recipients only: that all app features be optional. Five preferences to improve immunosuppression adherence were identified. Recipients’ preference was that the app could provide (1) support while traveling, (2) access to laboratory results, (3) benefit to younger or newly transplanted recipients; both recipients and HCP preference was for the app to provide, (4) linkage to pharmacy, and (5) self-management and accountability (see Figure 1).
Priorities and preferences for app development to improve immunosuppression adherence.
Development of an app to improve communication entailed 5 essential priorities. HCP prioritized (1) clarity on scope of the app, (2) legal, ethical, and professional obligations, (3) charting; both recipients and HCP prioritized, (4) HCP workload, and (5) broader medication and health concerns. Two preferences to improve communication were identified. While HCP preferred (1) tech support, both recipients and HCP preferred and (2) app access for nontransplant HCP (see Figure 2). (See illustrative quotes in Table 2).
Priorities and preferences for app development to improve communication.
Illustrative Quotes.
App Development to Improve Immunosuppression Adherence: One Essential Priority
All app features be optional (recipients)
Development of an app to improve immunosuppression adherence was prioritized by recipients only. Healthcare providers, unexpectedly did not prioritize development of an app toward this goal, particularly in comparison to prioritization for communication (outlined below). Recipients framed this within individualized choice. Recipients consistently stated the importance of ensuring all app features were optional; that is, anyone using the app could choose whether to activate any feature (such as alarms). Most recipients were not interested in using the app as a device to track medication adherence; sharing that information with the transplant clinic team was perceived as unnecessary “monitoring.” These recipients suggested that receiving a kidney transplant gave them freedom (from dialysis) and control over their own health; being monitored through an app was perceived as contrary to that gain.
App Development to Improve Immunosuppression Adherence: 5 Preferences
Support while traveling (recipients)
When discussing development and design of the app to improve immunosuppression adherence, recipients preferred using the app for support while traveling. One unique aspect of this preference was for the app to help with medication timing when crossing time zones. Another preference was to be able to use it for healthcare advice while traveling if local HCP were unfamiliar with the kidney transplant context of care.
Access to laboratory results (recipients)
A design feature that recipients raised spontaneously (ie, unprompted through the question guide) was having access to laboratory results (specifically blood work) on the app. Many recipients stated they closely monitored laboratory results and sometimes struggled for access to this information. Having laboratory results available through the app was of strong interest, an opportunity for greater control of their own health data.
Benefit younger or newly transplanted (recipients)
Also unsolicited through the focus group questions, recipients shared their preference about the app’s intended users. Recipients commonly stated the app would be most useful for “younger” generations whom they assumed would be more likely to use an app. Recipients recalled their early days posttransplant as being physically challenging and tumultuous in terms of medication management. They suggested that an app would have been most helpful to them at that time and would likely be so for other recipients immediately posttransplant.
Linkage to pharmacy (recipients and HCP)
Both recipients and HCP preferred linkage to pharmacy be included in app development. They shared the desire to have the app link to the clinic’s pharmacy as well as other retail pharmacies for medication management. Both groups perceived tracking medication supply, ordering medications, managing prescription changes and medication safety (eg, alerts for allergies or drug contraindications) would be easier and more efficient if managed through the app. Healthcare providers also stated that the app could be used to house insurance coverage of medications. Recipients’ preferences were that all medications would be listed in the app (ie, not limited to immunosuppression medication). While recipients wanted greater access, there was inherent conflict here with HCP who highlighted concerns about workload, accuracy, safety, and professional responsibility if other medications were included in the app.
Self-management and accountability (recipients and HCP)
Recipients and HCP both preferred that app development would facilitate recipients’ self-management, specifically their accountability or responsibility for their own health. Recipients stated concerns about being monitored for medication adherence through the app and feared it would create overreliance on clinic staff. Similarly, HCP were hesitant about taking responsibility for entering medication information changes for recipients, stating concerns about the potential for confusion.
App Development to Improve Communication: 5 Essential Priorities
Clarity about scope of the app (HCP)
One of the strongest priorities for HCP was clarification about the scope of the app. They raised a multitude of questions about the “boundaries” of the app. They wondered whether the app would include transplant care information or broader healthcare information. They questioned if the app would be limited to immunosuppression medication or all medications. Healthcare providers prioritized articulation of “who” would be responsible for updating information in the app for ongoing accuracy.
Legal, ethical, and professional obligations (HCP)
Healthcare providers believed that for the app to improve communication, legal, ethical, and professional obligations needed to be addressed. Healthcare providers raised concerns about legal issues, and ethical principles such as confidentiality. Healthcare providers wanted assurance that the app would meet privacy regulatory requirements for recipient data. Interestingly, these concerns were rarely raised within the recipient focus groups. Healthcare providers highlighted the importance of explicitly stating the limits of legal and professional obligation in the app. Similar to their questions about scope of they app, they sought clarity about who would be responsible or liable for medication reconciliation, data accuracy, and so on.
Charting (HCP)
Healthcare providers prioritized charting for app development to potentially improve communication. They expressed concerns about how communications via an app would be documented in the medical record. It was important to HCP that communications via an app would not require duplicate documentation but rather that app-based communications would be integrated automatically into the EMR. They also stated the importance of including charting safety features in the app (eg, soft and hard dose limits, flags for potential drug interactions, allergies, or drug tolerance issues).
HCP workload (recipients and HCP)
A commonly expressed concern for both recipients and HCP was the potential for the app to add to the workload of the HCP. Recipients and HCP shared the belief that the clinic staff were already working at capacity. They stated fears that the app would inadvertently decrease the quality of care by decreasing the amount of time available for communication with recipients. Both groups were unequivocal in their opinions that to improve care, the app’s design must not increase HCP workload and be resourced appropriately.
Broader medication and health concerns (recipients and HCP)
A top priority for both groups was HCP-recipient communication through the app about broader issues related to medications and health concerns. Healthcare providers were cautious, concerned that recipients would expect the app to be a vehicle of communication outside of clinic (and their work) hours. Recipients stated that broader communication with clinic staff was a top priority for app design, for the very reasons HCP anticipated—increased access to HCP. Recipients hoped the app would improve communication in general, and specifically for after-hours access for urgent healthcare concerns. Recipients shared their dilemmas when they were uncertain about the appropriate course of action for their symptoms, and their only option was to seek care from providers who lacked the clinic staff’s expertise. Recipients perceived that communication with clinic staff at these times would facilitate good care decisions and be a cost savings to the healthcare system.
App Development to Improve Communication: Two Preferences
Tech support (HCP)
When discussing future development of the app to improve HCP-patient communication, HCP preferred that recipients would have access to “outside” tech support for the app. They believed that tech support should not be provided through the transplant clinic.
App access for nontransplant HCP (recipients and HCP)
Both recipients and HCP were interested but uncertain how other HCP outside of the transplant clinic would access the app. For example, recipients wished to share their medication lists through the app with other HCP within their broader circles of care. Although HCP similarly stated their interest in having HCP outside of the transplant clinic access the app, they also wanted clarification about roles and responsibilities for ensuring the accuracy of the information available in the app which would be shared outside of the transplant clinic, particularly updated medications.
Discussion
The overarching aim of this qualitative study was to explore the essential priorities and preferences of kidney transplant recipients and HCP to inform the development of a smartphone app to improve immunosuppression adherence and communication. Interestingly, we found that HCP did not prioritize app development to improve immunosuppression adherence. Perhaps most importantly, recipients had reservations about an app for adherence since they felt transplantation provided freedom and potential app monitoring would infringe on their independence. Instead, HCP and recipients stressed improvement in communication. Communication was valued over adherence. Participants envisioned use of a comprehensive platform for broader communication between themselves, pharmacies, and nontransplant clinicians while upholding security requirements and streamlining HCP workload. In this discussion, we address not only the creation of an app to improve immunosuppression adherence and communication but also how these findings add to literature in the field and inform future technological interventions.
While one of our goals was to explore app development to improve immunosuppression adherence, it is instructive to learn that recipients prefer freedom and control over their medication usage, rather than using the app to monitor medication adherence. However, this opinion may be driven by the fact that most recipients who agreed to participate in this study were motivated individuals with high self-management, and perhaps were already adherent to taking their medications. Furthermore, recipients suggested that use of the app for medication management in the early posttransplant period would be very useful during that stressful and tumultuous time, a finding corroborated by Nielsen et al with recipients who received a telehealth solution after a kidney transplant. 32 Through this study, we learned from recipients that they did not want to be monitored; they wanted control.
Although technology may broadly assist patients in beneficial health behaviors, 33 patients’ input in design is critical for success.34-36 For technologies to be effective, they must meet users’ needs, be easy to use, and be perceived as useful.37-41 Involving end-users in the design of health technologies through “user-centered design,” improves future usability and quality, and the likelihood of adoption.24,42 Both recipients and HCP end-users envisioned wider use of an app to improve communication pertaining to overall experiences within and outside of transplant care. Recipients saw the potential for greater access and control of their broader health information (including blood work), and improved communication with both their transplant and nontransplant HCP. However, there is inherent conflict here with HCP who expressed fears that greater access by recipients may increase their workload. Remarkably, patients were also concerned about HCP workload from the app, fearing it would decrease rather than increase communication with HCP. Yet it is important for HCP to know that recipients desire greater access, independence, and ownership; future research is needed to explore how such changes might impact HCP workloads. Healthcare providers prioritization of workload issues, charting, and need for clear articulation of scope, such as “who” would be responsible for data accuracy, address potential acceptability and use by HCP users. 43 While recipients did not highlight concerns about security, details about liability, privacy, and integration with the EMR would need to be clearly outlined to support communication, and ultimately future adoption. These concerns are consistent with findings by Nguyen et al 10 in the TAKE-IT TOO study.
While our intention was to inform the development of a smartphone app, recipients and HCP imagined a comprehensive platform for broader communication perhaps resembling an inclusive portal accessible by patients, HCP, pharmacies, nontransplant HCP, and health insurers. Future research is needed to enact their recommendations. While patient portals exist and are under development internationally, 44 including in kidney transplant care, 45 we cannot conclude a portal would improve communication, a finding supported by Lockwood et al. 46 However, others have identified that improved communication and relationships between recipients and HCP lead to better immunosuppression adherence. 47 Similarly, Reese et al 48 found that electronic pill-bottle monitoring, along with text reminders to kidney transplant recipients and notifications to HCP, resulted in 88% immunosuppression adherence compared with 55% with monitoring alone. Future research is needed to explore use of patient portals with transplant recipients, HCP-recipient communication, and impact on work processes. Given the global technological explosion and the COVID-19 pandemic-driven psychosocial distress on patients, consideration of electronic interventions specifically to improve communication is both required and timely.49,50 However, while this is an important area of further research, we acknowledge that there is a paucity of economic data to support broad implementation of mobile health interventions.51,52 Looking ahead to future research, while this study was carried out with kidney transplant recipients and HCP, after the prototype app is developed, we intend to pilot it, undertake several rounds of usability testing, and then scale-up to all organ transplant groups within our transplant center.
This is the first study to undertake a user-centered design to explore recipients and HCP priorities and preferences to inform development of an app to improve immunosuppression adherence and communication. However, there are some limitations. The transferability of some of the themes to other transplant settings is uncertain, particularly low-income countries. Our findings are potentially limited by underrepresentation of physicians who may have identified different priorities or preferences, and recipients with racial/ethnic diversity (which was not collected). Despite efforts to seek broad opinions for the app design, we acknowledge selection bias of transplant recipients who perceived themselves to be adhering to immunosuppression medications. Furthermore, the cause of end-stage kidney disease reflected in our recipient sample is atypical with higher representation of glomerulonephritis. Given that recipients with glomerulonephritis tend to have less comorbidities, this selection bias may have further influenced the findings about app priorities and preferences. Inherent in studies aimed at improving adherence, the most challenging part is to engage those who struggle with adherence. Future research guided by integrated knowledge translation may purposefully engage in patient-oriented research with people who are at highest risk for nonadherence to tackle unanswered “thorny” questions in this field. However, as suggested by the recipient participants, an app may be most needed early in the transplant course or among younger generations, who we were able to consult through additional focus groups.
Conclusions
Before implementing technological solutions, it is imperative that such design is informed by and responsive to users’ perspectives. While we explored development of a smartphone app to improve immunosuppression adherence, we found this was not a priority to HCP. Healthcare provider-recipient communication to improve overall experience within transplant care was prioritized over immunosuppression adherence. Kidney transplant recipients favored choice, independence, and greater access to their health information over potential monitoring. Healthcare providers and recipients together imagined use of a comprehensive platform for broader communication between themselves, pharmacies, and nontransplant clinicians while upholding security requirements and streaming HCP workload.
Supplemental Material
sj-docx-1-cjk-10.1177_20543581211072330 – Supplemental material for Designing an App for Immunosuppression Adherence and Communication: A Qualitative Approach
Supplemental material, sj-docx-1-cjk-10.1177_20543581211072330 for Designing an App for Immunosuppression Adherence and Communication: A Qualitative Approach by Kara Schick-Makaroff, Laura Lagendyk, Bethany Foster, Ngan N. Lam, Branko Braam, Aminu Bello, Soroush Shojai and Kevin Wen in Canadian Journal of Kidney Health and Disease
Supplemental Material
sj-docx-2-cjk-10.1177_20543581211072330 – Supplemental material for Designing an App for Immunosuppression Adherence and Communication: A Qualitative Approach
Supplemental material, sj-docx-2-cjk-10.1177_20543581211072330 for Designing an App for Immunosuppression Adherence and Communication: A Qualitative Approach by Kara Schick-Makaroff, Laura Lagendyk, Bethany Foster, Ngan N. Lam, Branko Braam, Aminu Bello, Soroush Shojai and Kevin Wen in Canadian Journal of Kidney Health and Disease
Footnotes
Acknowledgements
The authors would like to acknowledge the recipients and healthcare team for participating in the focus groups. They would also like to thank Canadian Society of Transplantation for providing grant funding to support this study.
Ethics Approval and Consent to Participate
This study was approved by the University of Alberta Health Research Ethics Board (Pro00082781) and Alberta Health Services.
Consent for Publication
Consent for publication of data was approved by all participants. All coauthors reviewed and approved the final manuscript for publication.
Availability of Data and Materials
No additional data or materials are available for sharing. Please contact corresponding author with any inquiries.
Author Contributions
K.W. designed the study, collaborated with practice partners, and guided the manuscript. K.S.M. and L.L. analyzed the data and drafted the manuscript, and K.S.M. revised the manuscript. B.F., N.L., B.B., and A.B. substantially contributed to the design of the study and provided critical revision of the manuscript. All authors read and approved the final manuscript.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: CST-Astellas T3 grant.
Supplemental Material
Supplemental material for this article is available online.
References
Supplementary Material
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